The document provides guidance for hostel staff on delivering high quality end of life care to homeless individuals. It outlines 6 steps in an end of life care pathway, from initiating discussions as end approaches to care after death. The guidance emphasizes identifying triggers for discussions, developing care plans, coordinating services, and treating individuals with dignity and respect regardless of setting.

1. End of life care
Achieving quality in hostels
and for homeless people a route to success

2. A practical guide to implementing high quality end
of life care for homeless people in our communities

3. Contents
3
Introduction
4
Background
5
Aim of the guide
6
Key considerations for delivery of end of life care
7
When to start thinking about end of life care
8
End of life care pathway
9
Step 1: Discussions as the end of life approaches
12 Step 2: Assessment, care planning and review
15 Step 3: Co-ordination of care
18 Step 4: Delivery of high quality care in different settings
21 Step 5: Care in the last days of life
24 Step 6: Care after death
27 Next steps
29 Useful resources
31 Appendix 1: Quality markers for end of life care
32 Appendix 2: Support sheet Mental Capacity Act
34 Appendix 3: St Mungo’s palliative care service pathway

4. Introduction
According to the 2008 End of life care strategy, high quality end of life care
“should be available wherever the person may be: at home, in a care home,
in hospital, in a hospice or elsewhere. Implementation of this strategy should
enhance choice, quality, equality and value for money.” (End of life care strategy,
Department of Health, 2008)
This strategy poses particular challenges in
relation to homeless people, who are often
described as a hidden population. Homeless
people are often overlooked when policies
are developed, and often not engaged with
service development.
Photo courtesy of St Mungo’s homeless charity
3
So the complexity of life for homeless people is
often mirrored by complexities around end of
life care.

5. Background
It is estimated that in England around 40,500
people are in the hostel system at any one
time and that over the course of a year
approximately 100,000 individuals move in
and out of it. For some the lack of a settled
home may be temporary and quickly resolved.
Others may be homeless or living in insecure
circumstances for longer periods and either
sleep rough, in squats or on friends’ floors
when not in the hostel system. The homeless
population is also very unevenly distributed
among PCT areas.
The Department of Health noted in 2010
“There is abundant evidence that people
who are sleeping, or have slept, rough and/
or are living in hostels and night shelters,
have significantly higher levels of premature
mortality and mental and physical ill health
than the general population.” (Healthcare for
single homeless people, Department of Health,
2010)
In addition, according to several sources, the
average age of death among people known to
be homeless is about 40 to 44. (Incidentally,
it is important not to cite these figures as life
expectancy rates. It simply means this was the
average age of death based on samples of
those who died while known to be homeless.)
Some of this can be attributed to the fact
that single homeless people have a high
incidence of physical health problems
compared to the general population. A
1994 study found that:
“Chronic chest or breathing problems and
frequent headaches were twice as high
among people in hostels and B&Bs and
three times as high among people sleeping
rough.
Wounds, skin ulcers and other skin
complaints were twice as high among day
centre users and three times as high among
soup run users.
Musculoskeletal problems were twice as
high among people sleeping rough.
Difficulty in seeing was experienced by
three times as many people sleeping rough
as the general population.
Mental health problems were eight times as
high among hostel and B&B residents and
eleven times as high among people sleeping
rough as the general population. One in
four single homeless people with mental
health problems had been in a psychiatric
hospital at some time in the past.
In comparison with the general population
heavy drinking or alcohol-related problems
were found to be less of a problem among
people in hostels and B&Bs than among
those sleeping rough.”
(Study by Wendy Bines of the Centre for
Housing Policy reported in Findings: housing
research 128, Joseph Rowntree Foundation,
1994)
Homeless Link’s Survey of needs and
provisions 2010 revealed that more than half
of homelessness projects across England see
clients who experience some sort of disability.
Disability can cover a range of conditions
including:
Learning difficulties
Mental health problems
Mobility
Sensory impairment
Developmental disability.
It is likely that some homeless clients have
an undiagnosed or unregistered disability.
Learning difficulties are particularly underreported and not always formally recognised
by professionals or included in commonly used
assessment tools.
4

6. Background
Aim of the guide
the community or in any other setting. The
guide is intended to support practitioners
and staff working in hostels to develop their
awareness and understanding of the end
of life care pathway and how it relates to
people in the hostel setting who have lifelimiting conditions. Of course, hostel staff
are not usually health care providers. Few
hostel staff possess specialist palliative care
skills while some hostels will not be able to
manage people with physical conditions or
those approaching end of life. So this guide
also offers signposting to more appropriate
resources.
Photo courtesy of St Mungo’s homeless charity
The aim of this publication is to provide a
practical guide which supports hostel staff
to engage with key professionals in ensuring
that those who may be in the last months
of their life receive high quality end of life
care. The guide may also be useful to health
professionals who work or link with hostels
in clarifying what measures need to be taken
to ensure that people can access appropriate
care.
Individuals approaching the end of their life
need high quality, accessible care if they are
to make genuine choices about how they
are cared for and where they wish to die.
Competent and compassionate care is also
critical to giving people the opportunity to
have a dignified death and offering families,
staff and other residents bereavement support
following a death.
This care should be of the same high quality
regardless of diagnosis and of whether the
care is carried out at home, in hospital, in
5
The guide has been developed by the National
End of Life Care Programme in conjunction
with a range of organisations working with
homeless people, as part of its route to success
series. It is intended to be a practical tool
offering advice on what staff can do as well
how and when to access specialist help.

7. Key considerations for delivery of end of life care
•
•
•
•
•
•
•
•
•
Care is client-centred and integrated
Treat individuals with dignity and respect
Identify and respect people’s preferences
Provide care after death
Do other professionals fully understand the
role of hostel staff?
Misconceptions about roles can lead to
mistaken assumptions. What can be done
to assist understanding?
The existing environment may not
encourage privacy or be suitable for
care and it may not be practicable to
consider rebuilding or remodelling hostel
environments. What other measures could
be taken?
Access to services may be problematic
because of other professionals’
misconceptions about an individual’s
background – for instance, homeless people
are often stigmatised as non-compliant and
unreliable. How can this be overcome?
The homeless population often decline to
engage with health services. What would
encourage them to engage?
Access to placement at end of life for
people with substance misuse problems
can be difficult because many care facilities
do not accept people with drug or alcohol
issues. Staff need to be aware of those
providers who do accept and provide for
this
Some individuals give very low priority
to their health needs. How will this be
managed within your service?
Some outreach services can have
bureaucratic barriers. How can these best
be overcome?
Many hostels tend not to retain residents
for a long time but help them move to
supported or independent living. With
collaborative working and planning this
should also be possible for those with end
of life care needs
• Many residents have very complex needs
including a high incidence of learning
difficulties, mental health problems and
dependency issues. As a result hostels may
not offer the best environment for end of
life care
• In future, health care will be commissioned
by localised GP consortia. It will be
important for hostel staff to be aware
who their local commissioners are and
to be involved in helping to identify their
residents’ health and social care needs
• Residents are often reluctant to plan ahead
but will inevitably see that other people in
the same situation have poor outcomes. An
open discussion about people’s expectations
can alleviate some of these concerns.
6

8. When to start thinking about end of life care
It is difficult to predict when people are
approaching the last 6 to 12 months of their
life but there are some ways hostel staff can
work with colleagues in health to improve
recognition and consider the important issues
that should be addressed at this time.
Providing effective, high-quality care for
someone during the end of their life is
challenging. Without support and information,
staff and carers can find the experience
overwhelming.
Identifying end of life care needs at an early
stage is beneficial and can allow more time
to plan appropriate support needs effectively
with and for someone. It may be that on
initial referral no specific action is taken, but
a resident’s future support needs and wishes
may be identified and their illness progression
can be monitored and reviewed when
appropriate.
This resource pack is intended to help you deal
with the challenges of supporting someone
who is dying and identify how and when you
need to access specialist support from health
professionals and other organisations.
It may be helpful to consider the
following when referring a resident to the
palliative care services or end of life care
services:
Where an actual prognosis is known:
• Who is the source of the prognosis (eg,
consultant, GP, clinical nurse specialist,
regional healthcare co-ordinator)?
• Is the resident aware of their prognosis?
• Is their prognosis months, weeks, days or
imminent?
• What are the main reasons for referral (eg,
physical, psychological, social, spiritual)?
• Is the resident aware you are making a
referral to the palliative care service?
7
Photo courtesy of St Mungo’s homeless charity
Where a prognosis is not known but there
are concerns that someone may be at end
of life:
• What is the primary/secondary diagnosis?
• Who is the source of the diagnoses (eg,
consultant, GP)?
• What are the main concerns for the
resident?
• Is the resident aware of your concerns?
• Who else is aware of these concerns?
• Have these concerns been discussed with
any of the following: consultant, GP, clinical
nurse specialist/district nurse, regional
healthcare co-ordinator?
(Checklist devised by St Mungo’s)

9. End of life care pathway
The guide follows the six steps of the end of
life care pathway, beginning with initiating
discussions as end of life approaches and
concluding with care after death.
Each section outlines the relevant step of
the pathway, questions to ask about the
individual’s care and the practitioner’s role in
that care. (Reference can also be made to the
relevant quality markers for end of life care.
See Appendix 1 for full list.) We also include
case studies highlighting best practice.
Step 1
Step 1
Discussions
Discussions
as the end
as the
of life end
of life
approaches
approaches
Open, honest
communication
Identifying
triggers for
discussion.
Step 2
Step 2
Step 3
Step 3
The guide will reflect the need to work
with other professionals in health and
social care and assist hostel staff to:
• Identify when someone is approaching the
end of life phase
• Assess needs and develop a care plan
• Review care planning
• Help to review practice
• Support communication and team working
• Understand that staff and fellow residents
may be affected by the death of a client
and identify some measures to support
them and provide information.
Step 5
Step 5
Step 6
Step 6
Delivery of
Delivery of
high quality
high quality
services in
services in
different
different
settings
settings
Care in the
Caredays
last in the
last days
of life
of life
Care after
Care after
death
death
High quality
care provisions
in all settings
Acute
hospitals,
community,
care homes,
extra care
housing
hospices,
community
hospitals,
prisons, secure
hospitals and
hostels
Ambulance
services.
Identification
of the dying
phase
Review of
needs and
preferences
for place of
death
Support for
both patient
and carer
Recognition
of wishes
regarding
resuscitation
and organ
donation.
Recognition that
end of life care
does not stop
at the point of
death
Timely
verification and
certification of
death or referral
to coroner
Care and support
of carer and
family, including
emotional
and practical
bereavement
support.
Step 4
Step 4
Assessment,
Assessment,
care planning
care planning
and review
and review
Co-ordination
Co-ordination
of care
of care
Agreed care
plan and
regular review
of needs and
preferences
Assessing
needs of
carers.
Strategic coordination
Co-ordination
of individual
patient care
Rapid
response
services.
Social
Social care care
Social care
Spiritual care services
Spiritual care services
Support for carers and families
Support for carers and families
Information for patients and carers
Information for patients and carers
8

10. Step 1
Discussions as the end of life approaches
“It can be very difficult to predict when a resident is going to die. We tend to try
to find informal and supportive ways to broach the subject with each and every
one of them if possible. Sometimes this is about picking up on a comment or
remark made about their mortality, and using this as an entry point to further
discussion.” Hostel staff member
Identifying when people are approaching
the end of their life can be complex. Many
hostel residents may have conditions like liver
damage and respiratory problems where the
stages of deterioration can be unpredictable.
9
A key challenge is knowing how and when
to begin a discussion with individuals about
their wishes as they near the end of life and
whether they should be referred to other
services.

11. Discussions as the end of life approaches
Ask yourself
How do you identify residents who are
approaching the end of life?
Are you aware of any triggers which
indicate it is an appropriate time for
discussion?
Are you certain you know whether a
client does or does not wish to have a
conversation about their future care?
What is your referral process to other
services? Do you have a robust referral
pathway?
Your role
Recognise when an individual’s signs and
symptoms have increased or condition has
deteriorated
Ask yourself the question “Would I be
surprised if this person were to die at some
stage in the near future?”
Identify, with the help of health
professionals, those who need to receive
end of life supportive care
Consider carefully whether the individual
wishes to have open discussions about
prognosis and possible future care options
Identify whether it is appropriate to open
a supportive discussion with the resident
about their wishes for end of life care and
the best time or circumstances to do that.
Consider accessible information, particularly
for those for whom reading may be an
issue due to learning difficulties, lack of
education and/or if English is not their first
language
Provide any relevant information required,
whether that is about the individual’s
condition, financial support, access to
specialist palliative care services or anything
else.
Top tips
Death and dying should not be hidden
from residents, relatives and carers.
Building a trusting relationship will help
facilitate conversations that may include
end of life care. Consider who else
needs to be involved
Consider how to integrate
conversations into existing activities and
assessments such as substance use or
general key worker discussions
Recognise that greater attention and
support may be required for those
residents who struggle to communicate
their needs because of learning
difficulties, dementia or other health
problems
As a caregiver it is important you
recognise how your own attitude to
death and dying may influence the
care you provide and your ability to talk
openly about these issues
Try to provide private spaces in which
to break bad news or initiate end of life
care discussions.
10

12. Discussions as the end of life approaches
Case study
Raising the subject of someone’s
approaching death is one of the most
difficult conversations you can have with
a resident, says Dave Millburn, but he
has become accustomed to it over the 12
years he has managed 32 Bentinck Road in
Nottingham.
The home offers long-term care and
support for 21 residents, all of whom are
50 or over. Most were previously homeless
and although some improve and move out,
many others stay there till they die.
Dave and his fellow members of staff will
not usually be the ones to break the bad
news in the first place. But immediately
afterwards they will be deeply involved
in trying to help their clients focus on
how and where they wish to spend their
remaining time.
“It’s a matter of trying to have an honest
and realistic dialogue at that stage,” he
says. “I often encounter a degree of shock
from the individual that at the age of, say,
50, they are dying. They say: ’How did I get
here?’”
One of the keys, he says, is trying to
connect with the individual and their
particular tragedy. “They didn’t plan for
this way of life. It’s invariably happened
because of a series of misfortunes and you
need to be able to understand this.”
It is vital to get the timing and the tone
of this conversation right, he says. Often
there will be a chance after someone has
been told they have a terminal condition to
sit down over a drink and ask them where
they want to go from here. “Most people
seem to want to engage with that.”
11
Dave says he tries to talk about practical
matters as well as people’s priorities.
He also looks for catalysts such as, for
instance, someone choosing a ‘weepie’
DVD that may offer an opening to talk
about what’s going on in their lives.
He notices a mood of “quiet observance”
when someone is dying within the
home. “The whole home feels it when
that happens. It’s just in the air. And it’s
something that has to be respected.”

13. Step 2
Assessment, care planning and review
“People here find it hard to go to people to talk about their health. We need
coaxing … because we’re all messed up.” Cedars Road client
An early assessment of a resident’s needs and
wishes as they approach the end of life is vital
to establish their preferences and choices,
as well as identifying any areas of unmet
need. It is important to explore the physical,
psychological, social, spiritual, cultural and,
where appropriate, environmental needs and
wishes of each resident.
12

14. Assessment, care planning and review
Ask yourself
Does your care plan assessment take into
account all aspects of end of life care
(social, emotional and spiritual) as well as
physical?
Who else needs to be involved in this
process?
Do you feel sufficiently confident and skilled
in supporting residents to identify their
wishes and preferences about their future
care? Might additional training and support
be valuable?
Your role
Consider how you can work with others
to ensure that a holistic assessment can
take place about the individual’s end of life
needs and preferences
Assess and respond sensitively to the social,
psychological and spiritual needs and
wishes of a resident as well as their physical
care needs
If necessary, support an assessment of the
individual’s ability to make decisions about
their care (guidance provided in the Mental
Capacity Act 2005 code of practice, see
Appendix 2)
Work with others to identify, record and
respond to an individual’s personal wishes
and preferences about their future care
(advance care planning), implement regular
reviews and verify this with their local GP if
necessary
Provide clients with a method of recording
their wishes and preferences. If they choose
to include an advance decision to refuse
treatment appropriate advice should be
sought
Communicate information about personal
wishes and preferences (with permission) to
relevant people such as the GP and out-ofhours service.
13
Top tips
If a resident makes an advance decision
to refuse life-sustaining treatment
it must be in writing, signed by that
person (or representative) and witnessed
Holding an open meeting with residents
can be a way of raising awareness about
the possibility of expressing personal
wishes and preferences
Care planning discussions may need to
take place in stages to avoid tiring the
person. This may also be the case should
the resident have learning difficulties or
mental health issues
Complete a key contact sheet as per
hostel paperwork already in situ (or
consider devising one) and keep in a
readily accessible place
Encourage hostel staff to have an input
into care planning discussions when
appropriate.

15. Assessment, care planning and review
Case study
The homeless charity St Mungo’s and
Marie Curie Cancer Care have set up the
first palliative care service in the UK for
homeless people with terminal illnesses.
One of the chief aims is to enable clients to
make informed decisions about how they
would like to be cared for until they die.
Other aims of the service, which has
been operating since September 2009,
are:
• Respect for an individual’s cultural
attitudes about death, enabling them to
die with dignity
• Helping to deal with the psychological
and emotional aspects of coming to the
end of life
• Death occurring in the environment
chosen by the service user.
The service’s first step is an initial
assessment to see if a client meets the end
of life care criteria. The question “Would
I be surprised if this person was to die
within the next 6 to 12 months?” can
help staff identify early on if someone is
approaching the end of their life.
Once a client is seen to meet the criteria,
the service can then begin to explore their
understanding of what is happening and
their preferences and wishes. Clients need
to be told about appropriate support,
particularly specialist palliative care support
for dealing with the different aspects of
end of life care. But above all they should
remain in control of the choices around
end of life issues, however difficult that is
for staff.
The service is led by Palliative Care Coordinator Peter Kennedy, whose role is to
co-ordinate care between the resident,
significant others, community palliative
care services, medical consultants and St
Mungo’s staff. He also provides training
and support to hostel staff.
Many residents’ illness trajectories are
difficult to predict, he says. “Over 90%
of deaths in St Mungo’s projects are
perceived as ‘sudden’, although not
necessarily unexpected. It is also difficult
to assess the severity of people’s illness,
particularly those with advanced liver
disease. The average age of death among
residents in our projects is 46.
“Another challenge is that many clients
approaching the end of their life have
mental health and substance use
problems. Working in partnership with
statutory and non-statutory agencies is
paramount in meeting the multiple needs
of those clients.”
14

16. Step 3
Co-ordination of care
“One challenge is that many clients approaching the end of their life have
mental health and substance use problems. Working in partnership with
statutory and non-statutory agencies is paramount in meeting the multiple
needs of those clients.” Peter Kennedy, St Mungo’s
Once a care plan has been agreed it is
important that all the services the resident
needs are effectively co-ordinated. Individuals
should be asked for permission to share
information with other services.
15
This is also an opportunity to establish contact
details for anyone they would like to be
notified if there is a change in circumstances
– and can in certain cases be used to help reestablish links with families.

17. Co-ordination of care
Ask yourself
Is there a communication system in place to
keep all members of the hostel team as well
as others such as friends and health and
social care professionals fully informed of
the end of life care plan?
Has a key worker been identified within the
hostel who can develop a strong working
relationship with those key professionals
who may be needed in order to meet the
end of life care plan?
Are systems in place for services to respond
rapidly and appropriately, (out-of-hours as
well as during working hours) to changes
in circumstances as end of life approaches?
For example, is there ready access to
medication and special equipment?
Your role
Top tips
Find out which pharmacies your local
hospice uses. These are more likely to
offer out-of-hours delivery of drugs
Building strong relationships with other
services – for instance, GPs, palliative
care teams and social care – can help
you provide residents with good end of
life care
Remember: good communication
systems need to work in both directions
and meet the needs of those at the
centre of the care
Phone calls between a dying person
and health professionals or relatives
can maintain contact and resolve some
issues without the need for a visit.
Ensure local healthcare professionals are
aware of those approaching the end of life.
Some GP practices may be implementing an
end of life care register. Is the hostel linked
to this multidisciplinary team mechanism?
Make sure good communication systems
are in place with all relevant services
Ensure you know who your key contacts
are across the provider services, voluntary
bodies and social care sectors
Try to ensure that individuals have the
benefits they are entitled to. These can
be claimed for under special rules when
someone is approaching the end of life. A
doctor has to sign a special form to initiate
this process (DS1500)
Inform out-of-hours services of anticipated
care needs
Inform ambulance services of anticipated
care needs.
Photo courtesy of St Mungo’s homeless charity
16

18. Co-ordination of care
Case study
Watching hostel clients in their final stages
can often be a distressing and painful
experience, says Danielle, a project worker
at St Mungo’s hostel in St Pancras, London.
Danielle works at a ‘continued use’ hostel,
which means all 21 clients at the home
are allowed to continue with their drink
and drug habits while staying there. The
principal aim is to provide them with a safe
space while offering support to help them
move forward in their lives.
Danielle works on a weekly or fortnightly
basis with four of these clients, agreeing
objectives – such as getting into meaningful
activities, training or employment, moving
into permanent accommodation or
accessing health services – and then doing
what she can to support them to achieve
their chosen goals.
Given their substance abuse, health
problems, such as liver damage in
particular, are never far away and while
some do manage to move on to lead more
independent lives, others do not. Sadly, last
year two of the hostel’s clients died – one
at the hostel and one in hospital.
In each case the end came quite suddenly
– although staff had seen signs they
were declining for some time before. The
problem, says Danielle, is that most of her
clients, being at the pre-contemplative
stage, tend to deny what is happening to
them so rarely have much time to prepare
for their death.
One client was drinking heavily and
vomiting and then bleeding. But every
time he was admitted to hospital he was
patched up and then discharged without
any specific advice or support. “The only
17
thing the doctors said was that of course
he was going to be like this because he
was drinking so heavily.” The man was
eventually referred to the St Mungo’s
palliative care service while his health
continued to deteriorate.
“We always try to make clear their
choices,” says Danielle, “but sometimes
they decide they don’t want to stop
drinking. But it’s difficult to see the decline
and not to be able to do anything about
it.”
Staff do also see signs of improvement
among other clients and many move on
to more independent lives, which makes
the job worthwhile. “They often say they
dislike the place when they first arrive,
but then after they leave you find them
coming back to chat with staff and/or
residents while they discuss where they’re
at, so that’s when you know you’ve done a
good job.”

19. Step 4
Delivery of high quality services in different settings
“We always try to make clear the choices they have but sometimes they decide
they don’t want to stop drinking. But it’s difficult to see the decline and not to
be able to do anything about it.” Danielle, St Mungo’s
In the last year of life, residents and their
families may need access to a complex
combination of services across a number of
different settings. They should be able to
expect the same high level of care regardless
of where they are being looked after. For
some - such as those who are frequently in
hospital - it may be useful to have a more
proactive approach.
18

20. Delivery of high quality services in different settings
Ask yourself
Has a policy for the management of end
of life care been developed within your
organisation? For instance, is there a
policy for what to do if a crisis occurs at a
weekend or in the middle of the night?
Can all staff access any internal or external
training and support programme for end of
life care?
Does the environment within the hostel
offer privacy, dignity and respect for
individuals and their families as the end of
life approaches?
What process is in place for referral to other
care settings if your hostel does not provide
end of life care?
What systems are in place to monitor and
evaluate the quality and delivery of end of
life care?
Can you ensure that any transition from the
hostel to a hospital is well co-ordinated and
minimises any distress for your client?
Your role
Establish or be aware of the operational
policy for implementing end of life care in
your hostel
Ensure you have awareness and
understanding of end of life care core
principles and values
Promote or participate in the different
aspects of end of life care training which
may be available to you. There is no set
format for the delivery of training
Where possible, access training around
communication skills, assessment and care
planning, advance care planning, symptom
management and comfort and well-being
Give consideration to the environment
in which end of life care and support is
delivered. For example, is there access to a
quiet room or other facilities for relatives?
Use the experiences of relatives, staff or
advocates to help provide constructive
feedback to support continuous practice
improvement
Work with key professionals to find an
appropriate place of care when it is no
longer possible to provide care in the hostel.
19
Top tips
Don’t forget the role that other
residents, particularly those who have
developed a close relationship with the
person who is dying, may be able to
play in the planning and delivery of care
Staff training needs should include not
only the physical aspects of care but also
psychological and spiritual care
Try to help the resident maintain the
maximum level of independence, choice
and control for as long as possible
It might be worth discussing with
community matrons and community
urgent care providers when it would be
appropriate to contact them. Ask for
information and contact numbers
Consider adapting end of life care tools
- that is, guidance and support to help
staff caring for people at the end of life
- for use in the hostel environment.

21. Delivery of high quality services in different settings
Case study
The Homeless Intermediate Care Pilot
Project has provided care and support to
a group of clients with life-threatening
conditions at the St Mungo’s Cedars Road
hostel in Clapham, London over the last
18 months, reducing deaths and cutting
hospital admissions.
The main purpose of the project, which
began in January 2009, was to reduce
mortality and morbidity while also cutting
secondary care usage. In 2008 there were
7 deaths with an average age among those
who died of 38. Since then there have been
only 3 deaths.
The project team consists of a band 7
nurse, a health worker and a sessional
GP, and offers intensive support to up to
10 clients at a time for 6 to 12 weeks. Its
main activities include outreach, clinical
interventions, liaison and referrals, screening
and advocacy.
Nearly 4 out of 5 clients have undergone
pre-detoxification. In addition, 90%
of women received cervical and sexual
health screening, 96% of all clients had
a comprehensive health assessment and
87% had a full blood screen.
Key workers say they now feel better
equipped to deal with health emergencies
and have more knowledge about the
conditions suffered by their most unwell
clients.
The plan is to move towards residents
dying in the place of their choice, usually
the hostel, says project lead Samantha
Dorney-Smith. However, because deaths
are often sudden, this has not always been
possible. “We do attempt to ensure death
is as dignified as possible and to re-engage
people with their families at the end.”
The level of illness and disease among
the 34 clients cared for over the first pilot
year was extremely high. 24% had had a
diagnosis of HIV, 34% had past hepatitis B
and 84% active or past hepatitis C. 83%
had been intravenous drug users, 74%
alcohol dependent and 88% had had
mental health problems. Many suffered
from serious conditions such as end stage
liver failure, acute syphilis and pulmonary
TB.
During that year the project has cut
London Ambulance Service calls by 67%,
hospital admissions by 77% and A&E
admissions by 52%. Repeat attendances
are also down. The length of admission has
increased slightly, reflecting a reduction in
inappropriate and self-discharges.
20

22. Step 5
Care in the last days of life
“In principle you do want to be able to support someone around the point of
death at home because the patient would want it rather than in hospital. The flip
side of that is that death in the hostel can be very upsetting both for other clients
and also for staff.” Samantha Dorney-Smith, Three Boroughs Homeless Team
A point comes when an individual enters the
dying phase. For some this may appear to
happen suddenly and without warning but
for many others it can be a gradual process.
It is vital that staff are able to recognise when
21
a person is dying and take the appropriate
action. How someone dies remains a lasting
memory for the individual’s relatives, friends
and the care staff involved.

23. Care in the last days of life
Ask yourself
Are you aware of the changes which may
occur in an individual’s condition during the
dying phase?
Are systems in place for involving friends,
fellow residents and, where appropriate,
families in aspects of the care-giving or in
discussions as death approaches?
Has the resident indicated any specific
wishes or preferences for this time?
Has the Liverpool Care Pathway (an end of
life care tool for those in their last days or
hours) or other equivalent pathway been
implemented?
Have you responded to any particular
spiritual or cultural needs that have been
recorded as part of the end of life planning?
Your role
Top tips
Discuss with medical staff the support
which would be required for the
resident to remain in the hostel
Where possible, plan to have someone
- a member of staff, health professional
or volunteer - available to sit with the
dying person. This will provide them
with comfort and reassurance
Consider ways to support any
residents, friends or relatives that the
individual wants to be present by
providing, where possible, transport,
accommodation, meals and emotional
support
Support people with the same respect
you would want for yourself or a
member of your own family.
Be aware of the processes which occur
during the last days of life and be alert
to the possibility that on occasions an
individual’s condition may improve
Have open discussions with relatives, friends
and other members of staff to ensure you
all know what to expect during the last days
of life, and offer support where needed
Where possible adhere to an individual’s
stated wishes and preferences
If someone lacks mental capacity, try to
identify what they would take into account
if they could make their own decisions
Where possible have anticipatory
prescribing systems in place or a system for
rapid access to necessary medication
Anticipate and be prepared for any specific
religious, spiritual or cultural requests a
resident may make.
Photo courtesy of St Mungo’s homeless charity
22

24. Care in the last days of life
Case Study
Mary was a 44-year-old woman with
learning difficulties living at a local
authority hostel in Leicester when she
attended the Homeless Healthcare’s
weekly GP service to have a cervical smear.
The results were severely abnormal and
an advanced cancer of the cervix was
diagnosed, which required treatment with
chemotherapy and radiotherapy.
Mary had no family contact but with her
consent and with her input, her needs
were met by co-ordinating all aspects of
her care between the local authority, the
local hospice and Homeless Healthcare.
A member from the Homeless Healthcare
team attended every hospital clinic
appointment and all appointments for
treatment with her to ensure she wasn’t
alone and unsupported.
During treatment Mary was often unable
to completely self manage and the local
authority facilitated a transfer from the
self-catering women’s hostel where she
was staying to a self-contained ensuite flat
within the multi-agency Dawn Centre, a
44-bed hostel and YMCA drop-in centre
which also accommodates the Homeless
Healthcare health suite.
During this time her application for a
bungalow reached the top of the housing
list but rather than moving her out quickly
as was usual practice, the local authority
liaised closely with Mary and partner
agencies and ensured her treatment was
complete and that she would be able
to manage before she moved on. Social
services arranged for a package of care
to be delivered daily and members of all
four agencies (that is, GP service, hospice,
local authority, social services) worked
23
collaboratively to ensure that a high
standard of care was consistently delivered
and all her needs were holistically met.
When her condition deteriorated and
she needed admission to the oncology
unit, a multi-agency case conference
was arranged with both Mary and the
above agencies present. She chose not to
return to her bungalow with an increased
package of care or to the local hospice but
instead chose to move to a nursing home.
Following an accompanied visit by a
member of the Healthcare Inclusion team
she selected a bed in a local nursing home
experienced in delivering palliative care
and where she eventually died. On one
of the team’s routine visits she said how
happy she was there.

25. Step 6
Care after death
“Over 90% of deaths in St Mungo’s projects are perceived as ‘sudden’,
although not necessarily unexpected. The average age of death among
residents in our projects is 46.” Peter Kennedy, St Mungo’s
Good end of life care doesn’t stop at the point
of death. When someone dies all staff need to
follow good practice for the care and viewing
of the body as well as being responsive to
family wishes. The support provided to staff,
friends and relatives will help them cope with
their loss and is essential to achieving a ‘good
death’.
24

26. Care after death
Ask yourself
Do mechanisms exist to support non-family
members such as staff, residents and friends
who may also be affected by a death?
Is there a clear plan to communicate the
death to any family members who have not
been involved until now?
Are systems in place for advising on or
offering bereavement support to staff,
friends and relatives?
Your role
Respect individuals’ faiths and beliefs and
take steps to meet their requirements
Be aware of verification and certification of
death policies
Provide appropriate information to relatives
and carers about what to do after a death
Offer information about bereavement
support services if required
Provide a comfortable environment in which
staff and, where appropriate, residents can
discuss or share their feelings
Provide staff, residents and relatives with
the opportunity for remembering and
celebrating an individual’s life in their own
way.
25
Top tips
Residents can be remembered through
photos and collages. Sometimes it is
really helpful for families to see the
photographs around the hostel after
someone has died – especially if they
haven’t been in touch with them
Recognise that a resident’s death may
be more significant to some than to
others and they may require additional
support – as may hostel staff
Train volunteers to support dying
people and their families and friends
and offer support to bereaved people
Hostel staff should be prepared for
relatives expressing anger if they have
not been contacted. They may also be
deeply regretful if they were estranged
from the individual before their death
Use review and feedback to support
continuing improvement.

27. Care after death
Case study
St Mungo’s aims to support those affected
by a resident’s death in a range of ways,
says the charity’s Palliative Care Coordinator, Peter Kennedy.
Deaths in projects are not uncommon and
are often sudden. As a result, a death can
leave residents and staff deeply upset and
sometimes traumatised.
There are many ways in which St Mungo’s
projects commemorate someone’s death.
Many set up a book of condolence. Some
arrange for a tree to be planted or for a
bench to be erected. Others hold annual
remembrance services.
What staff do in the immediate aftermath of
a death is vital, says Peter. This includes how
they inform clients, especially significant
others, of a death, as well as trying to
include them in funerals or remembrance
services. “This is really important for
lessening the impact and allowing clients to
express themselves. And it brings everyone
together.”
It is important to have systems in place
within the organisation that help to open
up dialogue with staff on how they can
support each other and then support their
clients.
Supporting relatives can also be
challenging. In many cases the individual
will have had little or no contact with
family members, so the first news they
may get after a long interval is that their
relative is dead. This can be stressful
for staff, particularly if they are caught
between carrying out the wishes of a
client and trying to deal openly and fairly
with relatives following a death.
Peter admits there is still some way to
go. “But more one-to-one, team support
and bereavement training is being made
available for staff and they now feel
much more assured that they have done
everything they could.”
It is also a time of high risk. Clients
tend not to have strong social support
networks, particularly outside the project.
The death of someone close can send
them into a downward spiral which has a
knock-on effect on other residents. Peter
suggests it may be sensible to start making
bereavement risk assessments in advance.
The effects of a death can also create high
levels of stress for staff who must try and
continue with ‘business as usual’ despite
their clients’ distress, which they may be
sharing.
26

28. Next steps
Identify how well your organisation is
prepared for managing the needs of
someone reaching the end of their life
The ideal time to talk to people about
end of life issues is when they are still
well. It may be helpful to sign up to an
organisation like the Dying Matters coalition
to get access to free leaflets and guidance
that can help open up discussions earlier
What policies and referral pathways are in
place now and how can they be improved?
(see Appendix 3 for an example of a
palliative care pathway developed by St
Mungo’s)
Share this information with all staff who
may be involved in the delivery of end of life
care
Complete the key contacts sheet and keep
in a visible place. This will allow you to have
available local information about relevant
services including bereavement services
Consider if it would be useful for a
dedicated person to do a course in
bereavement counselling
Look after yourself and each other: build in
time to talk about difficult situations
Find out if there is any available training in
your area
Check the available resources which are on
the National End of Life Care Programme
website
Check National End of Life Care Programme
support sheets relevant to this publication.
27

29. Next steps
Are you prepared as an organisation?
Case study
Joanne is 30 years old. She began drinking
heavily at age 14 and for many years
has been using substances such as crack
cocaine and heroin. She was diagnosed
with advanced liver disease 12 months
ago. In a recent hospital admission the
medical team told her that if she did not
stop drinking her life expectancy would be
less than six months.
Joanne is currently awaiting the outcome
of an application for funding for a detox/
rehab programme. Her engagement
with substance use agencies is erratic
and her motivation poor. She still has
periods of feeling unwell with admissions
to hospital. But she continues to receive
psychological and emotional support
from staff and has been introduced to the
community specialist palliative care team.
She is currently being considered for
funding for her third detox/rehab
programme in two years due to the
seriousness of her condition. In her
previous two programmes she completed
detox but did not reach the rehab stage.
She is aware of how unwell she is and
continues to live with the belief that she
will die within months if she does not get
into a detox/rehab programme.
Many staff at the hostel where Joanne lives
were insistent she had to stop drinking
immediately to improve her chances of
living longer. But it is important to allow
clients to remain in control of the choices
they face when dealing with end of life
issues, however difficult staff find them.
Photo courtesy of St Mungo’s homeless charity
In Joanne’s case this meant accepting the
possibility that, for whatever reasons, she
may not be able to undertake or complete
a detox/rehab programme, knowing that it
will shorten her life. It was also important
to let her know that staff would back
her request for another chance at detox/
rehab and that whatever the outcome they
would provide support. This allowed her
to retain control of her life but not feel
abandoned, regardless of the choices she
made.
28

30. Useful resources
For further details on the case studies in this
document go to www.endoflifecareforadults.
nhs.uk/case-studies
End of life care strategy: promoting high
quality care for all adults at the end of life,
Department of Health, 2008
People not paupers: who cares when someone
dies homeless?, UNLEASH (Church Action on
Homelessness in London), 1998
Healthcare for single homeless people,
Department of Health, March 2010
Dying for a home, Dr Christine Hugh-Jones,
The Willow Walker (magazine working with
homeless people in Cambridge, now known as
FLACK), Autumn 2009
Personal health budgets: understanding the
implications for staff, Department of Health,
2009
NHS Choices (patient information)
End of life care in advanced kidney disease:
a framework for implementation, National
End of Life Care Programme/NHS Kidney
Care, 2009 (See National End of Life Care
Programme website for further examples of
condition specific publications)
Common core competences and principles for
health and social care workers working with
adults at the end of life, National End of Life
Care Programme/Department of Health/Skills
for Care/Skills for Health, 2009
Carers at the heart of 21st century families and
communities: a caring system on your side, a
life of your own, Department of Health, 2008
29
Preferred priorities for care (PPC), National End
of Life Care Programme, 2007
Advance care planning: a guide for health
and social care staff, National End of Life Care
Programme/University of Nottingham, 2008
Advance decisions to refuse treatment: a
guide for health and social care professionals,
National End of Life Care Programme/National
Council for Palliative Care, 2008
Mental Capacity Act 2005 code of practice,
Department for Constitutional Affairs, 2007
(See also Appendix 2: Support sheet Mental
Capacity Act)
Best interests at the end of life: practical
guidance for best interests decision making
and care planning at end of life, Hutchinson/
Foster (Central Lancashire PCT/East Lancashire
PCT), 2008
Planning for your future care: a guide, National
End of Life Care Programme/National Council
for Palliative Care/University of Nottingham,
2009
Making a will (Directgov guidance on wills
including links to Citizens Advice Bureau guide
to making a will and Age Concern fact sheet)
Our health, our care, our say: a new
direction for community services, Department
of Health, 2006
Living and dying with dignity: the best practice
guide to end-of-life care for people with a
learning disability, Mencap, 2008
End of life care strategy: quality markers
and measures for end of life care, Department
of Health, 2009

31. Useful resources
Transforming community services: ambition,
action, achievement transforming end of life care,
Department of Health, 2009
Macmillan out-of-hours toolkit learn zone. See www.
macmillan.org.uk/learnzone
Gold Standards Framework
The Liverpool Care Pathway for the Dying Patient
Can you see me? (DVD), The National Council for
Palliative Care, 2010
Useful websites and organisations that have
contributed to this publication:
Crisis www.crisis.org.uk
Dying Matters coalition www.dyingmatters.org
Homeless Link www.homeless.org.uk
Marie Curie Cancer Care www.mariecurie.org.uk
National Council for Palliative Care www.ncpc.org.uk
National End of Life Care Programme www.
endoflifecareforadults.nhs.uk
National Veterans Foundation www.nvf.org
Salvation Army www.salvationarmy.org.uk
Shelter www.shelter.org.uk
St Mungo’s www.mungos.org
Thames Reach www.thamesreach.org.uk
30

32. Appendix 1
Quality markers for end of life care
(End of life care strategy: quality markers
and measures for end of life care, Department
of Health, 2009)
1. Have an action plan for the delivery
of high quality end of life care, which
encompasses clients with all diagnoses,
and is reviewed for impact and progress.
2. Institute effective mechanisms to identify
those who are approaching the end of life.
3. Ensure that people approaching the end of
life are offered a care plan.
4. Ensure that individuals’ preferences and
choices, when they wish to express them,
are documented and communicated to
appropriate professionals.
5. Ensure that the needs of carers are
appropriately assessed and recorded
through a carer’s assessment.
6. Have mechanisms in place to ensure that
care for individuals is co-ordinated across
organisational boundaries 24/7.
7. Have essential services available and
accessible 24/7 to all those approaching
the end of life who need them.
8. Be aware of end of life care training
opportunities and enable relevant
workers to access or attend appropriate
programmes dependent on their needs.
9. Adopt a standardised approach (the
Liverpool Care Pathway or equivalent) to
care for people in the last days of life.
10. Monitor the quality and outputs of
end of life care and submit relevant
information for local and national audits.
31

33. Appendix 2
Support sheet Mental Capacity Act How should people be helped to
make their own decisions?
(Compiled from the Mental Capacity Act 2005
code of practice by Julie Foster, End of Life
Care Lead, Cumbria and Lancashire End of Life
Care Network)
The Act is intended to be enabling and
supportive of people who lack capacity, not
restricting or controlling of their lives. It aims
to protect people who lack capacity to make
particular decisions, but also to maximise their
ability to make decisions, or to participate in
decision-making, as far as they are able to do
so.
The five statutory principles are:
1. A person must be assumed to have capacity
unless it is established that they lack
capacity.
2. A person is not to be treated as unable
to make a decision unless all practicable
steps to help him to do so have been taken
without success.
3. A person is not to be treated as unable to
make a decision merely because he makes
an unwise decision.
4. An act done, or decision made, under this
Act for or on behalf of a person who lacks
capacity must be done, or made, in his best
interests.
5. Before the act is done, or the decision is
made, regard must be had to whether
the purpose for which it is needed can
be as effectively achieved in a way that is
less restrictive of the person’s rights and
freedom of action.
To help someone make a decision for
themselves, check the following points:
Providing relevant information
Does the person have all the relevant
information they need to make a particular
decision?
If they have a choice, have they been given
information on all the alternatives?
Communicating in an appropriate way
Could information be explained or
presented in a way that is easier for the
person to understand (for example, by using
simple language or visual aids)?
Have different methods of communication
been explored if required, including nonverbal communication?
Could anyone else help with
communication (for example, a family
member, support worker, interpreter,
speech and language therapist or
advocate)?
32

34. Appendix 2
Assessing capacity
Anyone assessing someone’s capacity to
make a decision for themselves should use
the two-stage test of capacity.
Does the person have an impairment of
the mind or brain, or is there some sort of
disturbance affecting the way their mind or
brain works? (It doesn’t matter whether the
impairment or disturbance is temporary or
permanent.)
If so, does that impairment or disturbance
mean that the person is unable to make the
decision in question at the time it needs to
be made?
Assessing ability to make a decision
Does the person have a general
understanding of what decision they need
to make and why they need to make it?
Does the person have a general
understanding of the likely consequences of
making, or not making, this decision?
Is the person able to understand, retain, use
and weigh up the information relevant to
this decision?
Can the person communicate their decision
(by talking, using sign language or any
other means)? Would the services of a
professional (such as a speech and language
therapist) be helpful?
Assessing capacity to make more complex
or serious decisions
Is there a need for a more thorough
assessment (perhaps by involving a doctor
or other professional expert)?
33

35. Appendix 3
St Mungo’s palliative care service pathway
Receipt of referral to PCC
PCC contacts referrer for
more verbal information
Does the resident meet St
Mungo’s referral criteria for PC
services?
Identificatipn of key
care workers
No
Pass on to alternative more
appropriate services
No
Identify key concerns
Identify key professionals
Identify action points
Yes
PCC contacts referrer for
initial assessment
Yes
Does the resident wish to
engage with the PC services?
Attempt to engage
resident re identified
concerns/
medical consent
Contact and visit resident
Identify resident’s wishes
Assessment of care needs
Yes
Does the resident wish
to engage?
PCC undertakes review with key
caseworker(s) of available services to
support resident’s choice
Can the resident’s wishes be
supported practically?
No
Yes
Enable services to be put
into place
No
No
Consider alternative options
Yes
Implement care plan
Do the resident’s needs/
wishes change?
34

36. Definitions
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